Family history of Parkinson's spurs Danville couple to action

Jim and Chris Edlund are photographed at the Blackhawk Automotive Museum next to a 1961 Jaguar on Wednesday, April 30, 2014, in Danville, Calif.
(Jim Stevens/Bay Area News Group)

DANVILLE -- Jim Edlund is not one to wallow in self-pity -- or dwell on what his DNA code may foretell about his future.

But he's well aware of how his life could be upended -- first, perhaps, with a barely noticeable tremor in his hand, then a spasm in his arms, progressing to a rigidity or pain that takes hold of the entire body. He watched his father, two uncles and his aunt die of Parkinson's disease, as did his late paternal grandmother and great-grandfather -- an astonishing toll for a single family.

Edlund is not one to dwell on his own possible misfortune -- "I could get it or not," he says. But he is also not one to sit around when there's work to be done.

So he and his wife, Christine, who own a local jewelry store, have become two of the most prodigious fundraisers for Parkinson's research in the country. Their vehicle is the Danville d'Elegance Foundation, a nonprofit that organizes an annual upscale benefit car show of the same name in downtown Danville. This year's event will run from Sept. 20-21.

Through the years, and nine shows so far, the foundation has raised more than $2 million. In April, it even won national kudos from actor Michael J. Fox, after it raised $500,000 last year, for being the top fundraising team -- out of some 1,500 -- for his nonprofit Michael J. Fox Foundation.

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"It's really helped to put Danville on the map," said Christine Edlund, who also has a grandmother and an aunt who died with Parkinson's. "We've gotten calls from all around the nation, congratulating us for our efforts."

The award that Jim and Chris Edlund received from the Michael J. Fox Foundation for Parkinson's Research earlier this year is photographed. (Jim Stevens/Bay Area News Group)

It was a happy milestone in the growing nonprofit's development -- and a far cry from its first fledgling year, when it had just 20 volunteers and raised $50,000. Now, a decade later, it's grown and draws 10 times the volunteers and annual funds raised. Its success largely comes from a dedicated group of about 20 committee and board members who organize the event, the Edlunds said, which over time has been expanded to a full weekend of charity events including a gala dinner at Blackhawk Automotive Museum, the Napa Valley auto tour, "Thrill Ride" and auctions.

"When we started this 10 years ago, we never dreamed that it would grow to what it has," Jim Edlund said.

A number of the race car world's glitterati also have put their golden stamp of approval on the event, including Indianapolis 500 champion Danny Sullivan, American race car driver Sam Posey and the only American-born Formula One world champion Phil Hill, who eventually died from complications from Parkinson's.

"Obviously it's great to be No. 1 at whatever you'd doing," Edlund said. "But it's not a competition, but I think whenever you have an event or cause that comes from your heart, it shows."

Edlund also has volunteered hours helping scientists delve into his unique family history -- with hopes of unlocking the mysteries of the illness, which afflicts 1 million to 1.5 million people nationwide.

He's provided them with DNA and blood samples, done clinical evaluations and interviews, since his is one of a few families known to have lost an entire generation to Parkinson's.

"I've never heard of another case like that," said Dr. William Langston, founder and chief scientific officer for the Parkinson's Institute and Clinical Center in Sunnyvale.

The results of the study, which so far includes data from 150 Parkinson's-afflicted families, are still "a work in progress," he said. Although environment is also suspected to play a role, great advances in genetic analysis since 2007 have spurred vital discoveries: Six known genetic mutations have been found so far to trigger the disease, Langston said.

But stoic that he is, Edlund isn't pressing them for answers. That's not his style.

Instead he'd rather keep steadfastly plugging away at ways to find a cure. A positive outlook keeps him and his wife and their four kids, now in their 20s, going, he says.

"That's what has gotten a lot of my uncles, aunt and dad through it all -- and a good sense of humor," he said. "You just kind of deal with it."

And what drives him most, after nearly a decade of fundraising, isn't the prospect of finding a cure in his own lifetime, he said. "It's for all the people that we've met and whose children have it. That alone is an incentive to try to find a cure, if not for us in our time span -- certainly for our kids."